Today I took the fifth and final 400mg dose of Temozolomide for my fifth and penultimate chemotherapy cycle. At this point in the cycle the concentration of Temo in my body is probably at its highest, with a corresponding negative effect on my energy levels. Today I could hardly haul myself out of my chair. I have spent most of the day sitting and thinking about what I could be doing if only I could find the energy to actually do something.
It would probably be a good idea to wait until I am feeling a bit more lively before doing anything critical. Yesterday I started to work out a circuit layout for stripboard and I drew the microprocessor chip so the rows of pins ran along the copper strips, connecting them all together, instead of at right angles. I threw away the drawing, printed out a new blank template and then proceeded to do the same thing again!
Duh! Sometimes I feel as if I've had a lobotomy.
Showing posts with label Temozolomide. Show all posts
Showing posts with label Temozolomide. Show all posts
23 January - Significant improvement
"Significant improvement." That's what the doctor said my MRI scan results showed, during my re-scheduled appointment this morning. Good news for sure, yet I'm feeling vaguely short-changed that something which was such a big deal for me resulted in just a two-word answer which I wouldn't have received at all if I had not asked about the scan specifically. The entire consultation lasted less than five minutes.
I did learn that the bad constipation I have experienced when taking the heavy dose of temozolomide is caused by the anti-sickness tablets I take to avoid heaving them up again. The doctor suggested I take just one tablet instead of two a day. So far I have never felt like being sick at all and during the radiotherapy when I was taking a lesser dose of temozolomide I stopped taking the anti-sickness pills altogether. So this looks like something I can try.
It seems the public service cuts are beginning to bite. North Cumbria NHS Trust has one of the biggest deficits in the country I believe, and the effects are being felt by the drivers in the ambulance and transport service for whom all overtime has stopped. Patients now must book their own transport but have to provide increasing justification that they need it. I think that now my outpatient visits are down to once every 4 weeks we will have to take up some of the offers of lifts we have received, or consider getting the 600 bus which runs once every two hours to Carlisle from Cockermouth. If we had a driver in the family we'd be taking ourselves and paying for petrol and car parking so I don't know why they can't ask patients to pay the costs of the transport service instead of restricting it: It would still be cheaper than going by taxi.
"Significant improvement." Good news, anyway. I'd still like to have seen the evidence with my own eyes but I guess I should be happy with the answer and stop complaining.
I did learn that the bad constipation I have experienced when taking the heavy dose of temozolomide is caused by the anti-sickness tablets I take to avoid heaving them up again. The doctor suggested I take just one tablet instead of two a day. So far I have never felt like being sick at all and during the radiotherapy when I was taking a lesser dose of temozolomide I stopped taking the anti-sickness pills altogether. So this looks like something I can try.
It seems the public service cuts are beginning to bite. North Cumbria NHS Trust has one of the biggest deficits in the country I believe, and the effects are being felt by the drivers in the ambulance and transport service for whom all overtime has stopped. Patients now must book their own transport but have to provide increasing justification that they need it. I think that now my outpatient visits are down to once every 4 weeks we will have to take up some of the offers of lifts we have received, or consider getting the 600 bus which runs once every two hours to Carlisle from Cockermouth. If we had a driver in the family we'd be taking ourselves and paying for petrol and car parking so I don't know why they can't ask patients to pay the costs of the transport service instead of restricting it: It would still be cheaper than going by taxi.
"Significant improvement." Good news, anyway. I'd still like to have seen the evidence with my own eyes but I guess I should be happy with the answer and stop complaining.
13 December - Feeling a bit better
This has been the first day after I took the last of the big dose of temozolomide that I have started feeling a bit better. I have begun showing an interest in more foods and I've also started to find the energy and interest to do things instead of vegetating in my recliner. I guess I have to get used to the idea that the first couple of weeks of each chemo cycle are going to be basically a write-off.
Only four more cycles to go. At least (as I mentioned in my previous post) I don't have to start again until after Christmas.
Only four more cycles to go. At least (as I mentioned in my previous post) I don't have to start again until after Christmas.
4 December - Off the temozolomide
I've been off the temozolomide for a couple of days now. Still feeling mildly nauseous. Not enough to be in any real danger of throwing up, but enough that I probably would not bother to eat if Olga hadn't gone to the trouble of putting food in front of me.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
30 November - The foul taste is back
Four days into Cycle 2 of the high dose chemo and the foul taste in my mouth is back. I still consider that I've been fairly lucky as whilst the side effects of the temozolomide haven't been pleasant they have not been intolerable.
Despite taking laxatives before I started my bowels were once again set like concrete by day 3. And whereas I normally eat just about anything my appetite now is not as great as usual and there are some foods I just don't fancy at the moment. I don't even feel like chocolate!
Olga said she noticed the chemo was making me slow-witted. I can certainly testify to that. I'd rather not think how many hours I spent trying to get some radio and computer stuff to work for reasons that should have been blindingly obvious to anyone with a functioning brain. Ah well, nobody said this was supposed to be fun.
Despite taking laxatives before I started my bowels were once again set like concrete by day 3. And whereas I normally eat just about anything my appetite now is not as great as usual and there are some foods I just don't fancy at the moment. I don't even feel like chocolate!
Olga said she noticed the chemo was making me slow-witted. I can certainly testify to that. I'd rather not think how many hours I spent trying to get some radio and computer stuff to work for reasons that should have been blindingly obvious to anyone with a functioning brain. Ah well, nobody said this was supposed to be fun.
26 November - Feeling depressed
I hope that clomipramine is more effective against cancer than it is as an antidepressant. Because I have been on the full 150mg dose for several weeks now and yet I'm feeling quite depressed. The dizziness / balance issue I have complained of doesn't help my mood as it thwarts any attempt to try to lead a normal life. Neither does it help that I decided to see if I could sell our website business in order to devote my time and strength to fighting the cancer and enjoying what's left of my life. As tasks go it is right down there with selling one of your children into slavery and planning your own funeral. Perhaps it would be better just to let the business die a natural death.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
Subscribe to:
Posts (Atom)